I feel like I'm in that childhood game... pin the tail on the donkey. Doctors are blindfolded, spun around, and then feel around, trying to pin that dx down.

I just got a phone call from my immunologist's office. A return call since I left a message wanting to know if I can try something new for my so called migraines. One of her nurses had my answer. She said she didn't think it would interfere with tests but...

siiiiiiiiiiiiiiiiiiiiiiiiiiiiiiigh.... I'm trying really hard not to cry and get upset but,

she said the doctor wants me to have some blood drawn at a lab and also that she wants me to set up an appt with a rheumy in case it turns out I don't have HAE.

I told her that I have seen rheumy's and the last one I saw said I have nothing she can find but HAE and that I need to see someone who has more experience with it. Which is her and what I told her last week. I also thought she was going to help find out what is going on with me. She said she'd talk to the doctor and get back with me. I told her if she wants me to see a rheumy I'd need help choosing one because the two I've tried in the area on my ppo list were no help at all. The last one was 2 hours away and I can't make that trip anymore. But why see her again anyways when she can't find anything she can help me with.

So now I'm sitting by the phone waiting to hear from the doctor that was going to help me figure this out and start treatment. I'm hoping this was just a big mix up because I walked out of there last wednesday trying to keep my feet on the ground. She specifically said she would do the science and try to figure out what is going on, that she didn't think it was HAE but something AI evolving, and she would figure out a treatment plan. I don't get it... she's an immunologist...and thinks this is something autoimmune...

...I just wanna cry!

abbasgirl

08-31-2009, 11:40 AM

Nurse called back. She said the immuno talked to the last rheumy I saw. The rheumy said she never saw the original lab work that points to lupus/sjogren's syndrome. I'm floored! My pcp did my referral and was supposed to send all of that to the rheumy. I think I remember telling the rheumy how I ended up in her office too...that I was sent to a rheumy because of my blood work, both of the ones I saw so far stunk, and I was trying to find someone better.

The nurse said this is perhaps why the immuno said I should find a rheumy. I told her what the immuno told me last week... that she didn't think it was HAE and would help find out what is going on so I don't understand what's happening. I'm confused. She told both my husband and myself that we would figure out what is going on and create a treatment plan. The nurse said she would have the immuno call me and she'd call either today or tomorrow.

I feel like all the marbles in my head are rolling around.

Angel Oliver

08-31-2009, 11:43 AM

NOoooooooooooooooooooooooooooooooooooooooooooooooo ooooooooooo!!!!

Oh i carnt believe this.Listen hopefully its gonna be a mix up so please dont let em upset you.Im in the same boat,i have this ...i dont...i have lupus...i dont...i have fibro.....so far still got this.....it goes on n on.You have us all here and we will help you through this stressful time my friend.Just wait for the call ,see what they say,then tell us,we 'll all ive advise.One thing you have to do though is KEEP FIGHTING like me until one day,we too will become like many on here......and find a dx and then get out treatment.Just you watch this space.When we are 41 years old we will look back at this day and you will be so proud of yourself for logging in and posting this and looking back at this day.Because by then,hopefully 1 or both of us will be getting the right treatment for the right illness.
Im sending you gentle hugs....please don tcry we are here.

love
Amanda.xxxx

Angel Oliver

08-31-2009, 11:46 AM

Ok i read your next message....my rheumi also contradicts himself and backtracks on what he has said.Ive got to face him on the 9th and ask again for the right meds and i want to know WHATS WRONG WITH ME? Im wanting to give up but certainly will not,i too want to have a straight answer with meds to stop the pain and feel well again.So just hang in there.Its along miserable fight,but we will get there if we keep strong.

Love Amanda.xxxxxx

Spanglishqueen

08-31-2009, 04:54 PM

I'm so sorry you are going through this. Dealing with a diagnosis is so frustrating because everyone is wasting so much time on a label or not wanting to be the one that "pins the tail" that you never really get an answer. They sometimes are playing "hot potato" too as no one wants to give you a conclusive answer for fear of the BIG BAD insurance companies, etc... My doctor told me that today he would not label me because of the insurance companies. Please hang in there and know we are always here. And although I don't have especially large shoulders :tongue2:...you can always cry on them :hug:

abbasgirl

09-02-2009, 09:36 AM

I talked to the doc night before last but I was in no shape to talk afterwards. Yesterday I had an appointment to get my hair done which I'm grateful I was able to make it. It wore me out and made my head bang for a while but at least I look better. lol.

The immuno said the expert at Duke U told her it is possible to have HAE with only internal swelling but it's rare. They both think that's not what this is, but she's going to run some specific tests to make sure.

She told me about her chat with the rheumy and from what she shared with me about that call, I think that's what changed her mind about taking care of me.

She said the rheumy had just got in from vacation, she thinks, and didn't have my file in front of her, but she remembered me. She said the rheumy told her that she's never had a patient with serious numbers like I had on my blood tests initially go from that to lower numbers without treatment. I wanted to scream! I told her I was on treatments! I took Plaquenil and all sorts of toxic medications before I saw that rheumy! But she said that she thinks plaquenil is too mild a drug to change lab numbers. I have no idea if that's true or not, but she didn't ask me what else I've been on.

I told her I don't understand what's going on. The pcp finds me with all these symptoms and lab work pointing strongly to Lupus and Sjogren's. The first rheumy says I have UCTD who thinks in time we will most likely find lupus but he's not so sure about sjogren's. The second rheumy dxed me with MCTD, and the third one says no, I have HAE. Then a hematologist says something AI is going on but can only find I have elevated anticardiolipin antibodies. My pcp looks at all of this and says it only helps to solidify her belief that it's lupus, but no one will touch a dx outside of her except the last rheumy, but she said it's HAE. And now you think it's not that at all and something is "evolving"...and I can deal with that. It's hard but I can. What I have trouble dealing with is I'm not getting any treatment other than plaquenil which didn't help, but no one wants to touch any of the others except my pcp. When it gets so unbearable, she gives me a steroid shot, shakes her head, and sympathizes with me. The shot helps for about a week, then it all starts all over again and I end back in her office for another shot. They keep saying since there's no dx, I get no treatment other than plaquenil. This is year two of it being really bad and I'm tired! It's getting worse! The rheumy says it's HAE and I'm sent to you and you're sending me to a rheumy.

But I could hear things going on in the background so I'm not sure if she heard most of what I explained.

I don't think she told me all the details of her phone call with the rheumy, but something was said to make her change her mind. Both she and my old rheumy wants me to see a rheumy. She said she knows of a new one in the area that is just starting out and will have more time to focus on me since she's new. :shocked: I know it's a sad fact we're all familiar with, but to hear a doctor admit it...you know? sigh.

So she's setting me up to see this new rheumy and gave me the name of a neuro. So maybe we can find out what is up with my head.

I asked her why there are so many patients that have to wait years for a dx and the answer I got is something we already know. What it comes down to is we know so little about the immune system. But I think efficiency over quality plays a role too, as do office politics, and not considering the entire criteria. I understand why they're slow to dx, but it would be really nice if they could understand the situation that puts the patient in.

There needs to be a doctor specifically for the nameless puzzle pieces that wait so long for a dx.

So...before a week went by after I met her, I found out she's not the doc I'm looking for afterall. I'm waiting to have the blood drawn and see if the experts can tell me more about this HAE dx they don't think I have. I hope and pray I don't have it and that this new rheumy will be better than what I've seen. My pcp is gonna be ticked off. We were both feeling hopeful that this lady was gonna solve it and help me out. But who knows... maybe i had to go through that to find a good doctor...this new rheumy. Maybe. I was ready to throw in the towel and give up for a while but our sweet Amanda won't let me. Lol. Love you girl. Thanks Queen for the dry shoulder. Hot potato is right! I wonder what your doc means about the insurance companies?

I still want to just cry though! It was such a tease! And you trust these people to not make mistakes like seeing initial tests done and what treatments have been/are being used.

Delphinia981

09-02-2009, 04:43 PM

Oh honey...it's hard...I know! I can't believe that "new rheumy will have more time for you" line of B.S.!! I'd have stormed out right then and there!! Especially that the new doc doesn't seem that great....

...just hold on, girl. It took me 16 years to get a diagnosis...but it came. Yours will, too.

xoxoxoxoxoxo HUGS

mountaindreamer

09-02-2009, 05:01 PM

hi abbasgirl, girl, you have been put through hell by all of this dr. stuff....i can not believe they are doing this to you....i hope the new rheumy is wonderful, and is truly devoted to helping you....you deserve some good doctoring.

SandyR

09-02-2009, 08:18 PM

Abbasgirl,

Wow! I can't believe how quickly the situation has flipped you and dropped you on your head without a doc to go to! This stinks! I am going to pray with you that this new doctor is the one (please God let it be true) doctor to help you solve your problems. I hope that you are right that this new rheumy will be the silverlining on this cloud.

Sandy

Angel Oliver

09-03-2009, 05:10 AM

Just try and keep strong inside no matter how these doctors try to make you give up DONT.....all of us who are going through this rubbish with doctors all have to stick together and keep going.Im hoping this rheumi will be your help and be the one doctor to actually help you feel much better than you are right now.Its so draining having to keep repeating yourself over n over again to then be dragged back down again.One day we will be posting here like Delphina with our diagnosis just you wait n see.Hopefully you will get it before me,i really hope so.Until then,do something nice again......im still thinking of that massage chair in a hairdressers,thats so cool.Just keep coming here and we'll all help you through this until you find the help you so desperatley need.

love n hugs
Amanda.xxxxxxx

abbasgirl

09-03-2009, 09:09 AM

Thanks, Family.

I think this one bowled me over more than usual because she was so nice and it was such a different experience than other doc visits. I keep reminding myself that everything happens for a reason even though we don't always know why... but lately this just feels like such a long yo yo process...I'm so tired. Plus there are a lot of other things going on in life too that's stressful. That always adds to it.

I get so tired of the mistakes that are made and that's a mistake I don't see how could happen with both my old pcp and the rheumy. I tell every new doc how I ended up in their office, so the rheumy had to know there were labs done that prompted the doc to send me to a rheumy in the first place...why didn't she ask about it and want to see the paperwork if she didn't have it? And I told them what all I was taking for medication. I remember that because the rheumy gave me and hubby a speech that what my pcp had me on at the time she would NEVER prescribe to anyone. TOXIC!

I can see how the lack of time needed to cover all the bases can happen, it sucks and I think it's one of the many reasons it takes so long to get a dx, but to overlook something like initial tests! And say I wasn't on any treatment when I was... that's so stupid! No apologies. No reconsideration. Just trying to make what they think "work" so they can move on to the next patient. :grumpy:

Delphinia...oh sweetie, that's such a long wait you had. (((((Hugs)))))

Thanks Phyllis. I hope so too. My pcp has a theory that an older doctor wouldn't be afraid to dx me. I'm thinking of trying that if it doesn't work with this new doc. Older docs in the south tend to scare me due to experience with some bad doctors that weren't up to speed as doctors should be. But i'm being silly because not all older docs are bad or behind the times. I think I'm going through that ...what do they call it when you grow gun shy? Lol...I guess gun shy.

Thanks for praying Sandy! So far this isn't a record for me. The neuro I saw in July has the record for flipping the fastest. Nice at the door and then FLOP.

Amanda, thanks again sweetie. All of you are wonderful cheer leaders! If it wasn't for you all I'd give up looking into this. At least for a while. It wears out the heart and mind. I've seen 6 specialists in about 18 months now. I see a GI next week.

I would be happy if I could at least find one doctor that actually will do what they say they're going to do... and also not make such stupid mistakes. I take that back...they can make mistakes if they'll at least admit it and act professional about it.